Where poets, writers & artists won’t let chronic illness stand in the way of creativity
A patient advocate’s tale, and pain my toes, arms, wrist and nose
Welcome to Poet’s Corner (& Artists Too) ~ Issue #25
From Our Editor:
This issue is going to conclude with what I like to call the ‘triple advantage’ of being involved with CreakyJoints. We started in October with patient-centered research and then in November with sharing how advocacy can be fun. In this issue, we are going to continue with advocacy by highlighting Seth’s 50 State Network, with the help of my special guest Stephen Marmaras, who will explain his role with the Global Healthy Living Foundation, the parent company of CreakyJoints.
As this is our final issue for the year, I want to take this opportunity to thank each and every one of you, who was involved in some way. We tried something new this year, with featuring special guests and it really seemed to take off, so we will be continuing this next year. If you are interested in becoming a special guest for one of our issues, please feel free to contact me at [email protected] I will gladly guide you through the process. Our motto here is: ‘We do not allow our chronic illnesses to stand in the way of creativity.’
I want to wish each and every one of our readers the happiest of holidays!
CJ Poetry Editor
In this issue:
Highlighting Seth’s 50-State Network (Blog by Stephen Marmaras)
Medication taken the game (Poem by Mel Isherwood)
Trevor’s Barks of Gold (Special year-end message and collage by Brenda Kleinsasser)
Editor’s Note: Stephen Marmaras
Our special guest Stephen will highlight Seth’s 50 State Network.
Seth’s 50 State Network: The power of the patient voice
by Stephen Marmaras
Half the world is composed of people who have something to say and can’t, and the other half who have nothing to say and keep on saying it. – Robert Frost
My name is Stephen Marmaras and I am the Manager of State and National Advocacy at the Global Healthy Living Foundation (GHLF), the parent company of CreakyJoints. When contemplating what to submit for a guest entry to the “Poet’s Corner” I thought it was only appropriate to start my submission with a relevant poem. However, in the midst of the search I came across the above quote from Robert Frost which I think does a fantastic job of capturing the need for Seth’s 50 State Network.
Seth’s 50 State Network is a community of individuals that have endured the hardships of a chronic illness; the incremental or drastic loss of independence, the unrelenting medical bills, the restless nights and energy-depleted days, the isolation, and the frustration. These brave men and women have decided that enough is enough and they need to do something. Many advocates in the 50 State Network have said. “I became tired of being tired, lying in bed feeling completely helpless; a victim without purpose. That’s when I decided to tell my story.” There’s a saying that goes something like, “If you’re not at the table, then you’re probably on the menu.” In short, advocates at the 50 State Network have made a conscious decision to help thousands of others like them by pulling a seat up to the “table”.
If you are an individual with a chronic illness in this country, people are talking about you. Policymakers, regulators, insurers, pharmaceutical companies, pharmacies, and physicians are busy building the patient experience. The construction is taking place in statehouses across the country and on Capitol Hill in Washington, DC. Many of these stakeholders claim they are “putting the patient first,” to be fair, some are, but one thing is certain; the primary goal of stakeholders taking part in the conversation is to protect their interests. These interests don’t always align with those of the patient. This is why it’s so important that the individual for which the system is designed to serve, is part of the process of piecing it together.
In January of 2013 GHLF became aware of a piece of legislation that was being proposed in the North Dakota statehouse that had the potential to put in place many protections for patients. The legislation, Senate Bill 2190, dealt with a new class of imitation products for biologics called biosimilars. The
products are designed specifically to be high quality lower cost alternatives for the expensive brand name biologics used to treat many autoimmune diseases.
Senate Bill 2190 among other things stated that if a pharmacist was substituting a biosimilar (after being instructed to do so by an insurance company), they must notify both the prescribing physician and the patient. You may think this sounds like a straightforward easy decision. However, Senate Bill 2190 had a lot of opponents that did not want to see notification occur. Here is a perfect example of the interests of the stakeholders (insurance companies and pharmacists in this case) not aligning with those of the patient. Insurers want the cheaper biosimilar dispensed without pause. Creating a step of notifying the patient, they said would imply that the biosimilar was lower quality and subordinate. Pharmacists were against Senate Bill 2190 and notification because it would create additional steps in the dispensing process. They believed this would add an unreasonable administrative burden to them. Armed with pages of talking points and eloquent lobbyists, insurers, pharmacy trade associations, and others prepared to descend on North Dakota and see to it that Senate Bill 2190 was killed. The prognosis was bleak.
GHLF began searching for someone who may be impacted by Senate Bill 2190 and who may want to share their opinions about what it would personally feel like to have your drug switched without you knowing it. GHLF needed someone that could infuse the humanity of the situation into an otherwise corporate conversation. That someone was Brenda Kleinsasser.
Ms. Kleinsasser personifies the power of the patient voice. Brenda, a Bismarck, North Dakota resident is no stranger to many of the hardships that come with managing a chronic illness. She has been living with rheumatoid arthritis for 23 years and is a 6-year meningioma brain tumor survivor.
After being contacted by GHLF co-founder Seth Ginsberg and learning about the situation, Brenda immediately agreed that something must be done. She was going to pull her seat up to the table and share her story.
After working with GHLF to develop her testimony and hone her delivery, Brenda testified in March of 2013 before the North Dakota Health and Human Services Committee at the state capitol building. As part of her comments, Brenda looked into the audience of committee members and said, “As you can see, I have visible damage to my hands, this occurred before finding the right medication and this damage is irreversible.”
No longer were committee members discussing a bureaucratic decision that consisted of faceless standard operating procedures, record keeping steps, etc. The committee members were now looking into the face of a constituent. They were looking at the wounded hands that legislation should be designed to serve.
Brenda concluded her remarks by saying, “My doctor and I have worked hard over the past 10 years to find the right medication and dosage that work for me. Decisions about those things should be left up to us. This legislation ensures that if my biologic is substituted by my pharmacist, my doctor and I know.”
Following Brenda’s testimony, Senate Bill 2190 passed out of committee and was signed by the Governor on March 29, 2013. As a result, thousands of individuals with chronic illnesses in North Dakota are safer and more protected. Brenda’s story is an inspiration to the 50 State Network community and has served as a model in effective grassroots advocacy going forward.
Let’s go back to that quote by Robert Frost: “Half the world is composed of people who have something to say and can’t, and the other half who have nothing to say and keep on saying it.” Seth’s 50 State Network exists to welcome the weary that have something to say but are not able to say it. They may
not know who to contact to share their story, or where to go to do it, or when. The 50 State Network community provides the answers to those questions. We work with patient advocates to identify the opportunities for their stories to be shared across the country, we prepare them, and empower them.
So I ask, are you part of the half of the world that has something to say and feel as though you can’t? Put down the menu, pull a seat up to the table and join us. Commit to being a part of the conversation, take the Seth’s 50 State Network pledge, then register here and introduce yourself to the world as an advocate!
I pledge to find ways to advocate (however great or small), in spite of living with a chronic condition.
As a patient advocate, from this day on, I will:
1) Find ways to tell my story.
2) Help those who feel they have no voice.
3) Demand increased access to care— with no expectations.
4) Fight the good fight for me and for our community.
5) Acknowledge that self-care is important and know that taking care of myself is the first step to taking care of others.
By signing this, I affirm that I understand all the rights and responsibilities of being a patient advocate and that I will faithfully discharge my duties to the best of my ability.
Signed and Date______________________
Editor’s Note: Mel Isherwood
Mel Isherwood was diagnosed with Fibromyalgia in September of 2012. Her blessings are her family and friends. She discovered poetry as an outlet for emotion some years ago. In her own words, “To write has aided my own acceptance of the condition, whilst also hopefully helping others, whilst they read.” I would just like to add, that with the recent regulations on narcotics, this poem is very timely.
Photo courtesy of http://eastsidefriendsofseniors.org/help-with-managing-medications/
Medication taken the game
I have pain in my fingers pain in my toes
Pain in my arms, my wrists my nose
Pain in my ankles, knees, all my legs
Calling the doctor, stop my pain I beg
How can I do that the doctor asks me!
You had maximum opiates, and other meds, how can this be?
Well I’m not being funny and not being fly
I may as well drank water, eat smarties and poked out my eyes
People don’t know what it feels to be like this
It doesn’t heel with a smile and a kiss
So doctors comes up with a master plan
Double your sleepers – now that you can
Jeysus the amount if meds ingested
Would result in a horse being permanently rested
So as I write this verse, getting slower and slower
Under my duvet I’m sinking lower
I’m off to a land far away from here
A state of unconsciousness, no president here
A land of no dreams and a land of no pain
A place where medication has taken the game
So good night all as my thoughts get blurry
If I was speaking my words would be slurry
Tomorrow I plan to read this verse
Probably a nonsense, but cannot be worse
M Isherwood 10th October 2012
Brenda on Brenda:
We added a new feature this year: Trevor’s Barks of Gold, which I hope you have enjoyed. Trevor has a special year-end message for our readers.
I just want to thank CreakyJoints for allowing me to share my Barks of Gold with you. I really tried to make the messages simplistic, yet meaningful at the same time. As you know, I am Brenda’s storyteller for her blog. I also help her spread awareness for RA and especially the Mighty Little Heroes over at “Christine’s Kids” as I am their mascot. As you can see from the collage that Brenda made of me, I am a busy dog.
I just want to end this year by saying, make the most of your days. Live in the now, don’t be so worried about what is ahead, that you miss that wonderful opportunity, right before your eyes. I leave you with this: Be BRAVE! Keep FIGHTING! I believe in you!